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Saturday, October 8, 2016

3 weeks ago we ventured up to Adelaide for more tests and assessments for Aerynn. One of these was to see if she has an autism spectrum disorder. Her behaviours and reactions have always been a little left of centre, she is most definitely "quirky" and has a distinct American accent, despite need living in the US and having no contact with anyone who is of that culture.

I honestly had no idea what the results would be. Girls are extraordinarily difficult to diagnose with ASD as they are usually more social than boys in general and are good at masking any symptoms in an effort to blend in. Miss A can appear to be very social at times, she can maintain eye contact and has an amazingly rich vocabulary. She is obviously intelligent and wise beyond her years, but is this because of the huge amount of one on one time she has had growing up, is it because she has been conversing and relating to intellectuals most of her life? I really couldn't answer those questions. But I know that at the very least she has a sensory processing disorder. Her reactions to touch, clothing, brushing hair etc are off the richter scale. She needs help to start working on controlling her reactions, so off to the paediatrician, psychologist and speech therapists we went for a formal ASD assessment.

Miss A went off quite happily with the psychologist for some play based assessment in the adjoining room, whilst I discussed her development and reactions with the speech therapist. I have been through this process 3 times before. I knew what it was about, I came prepared. Our family is an open book when it comes to their medical needs and ensuring the specialist teams who are involved with them whom we trust implicitly. I was honest, transparent and up front with everything. I couldn't say with any certainty that her behaviours and reactions were not learned from her siblings. I was unable to explain where she picked up the unusual accent with which she speaks. I was also unable to exclude her behaviours and reactions being nurtured by myself throughout her early childhood when she was so desperately ill and I allowed her rely on me for everything, more than most other children are allowed.

It hit me quite hard. This assessment came the day after we were told about the retinosis pigmentosis. I was already shaken to the core and hurting for my baby girl. Having her childhood investigated at length, every incident, reaction and behaviour teased out in order to ascertain the why's and what for's... Seeing it all lay out in front of me, I felt guilty. I felt scared, but I felt relieved that I had taken the step that our paediatrician had guided me to take and have this assessment completed.

Yesterday I had our feedback session in regards to this assessment. Aerynn has been diagnosed with Autism. I don't know to what level yet, that will be confirmed in the written report I should receive in the coming weeks. She has been recommended to have occupational therapy, speech therapy and psychology at the very least in order to support her development.

I am still processing this diagnosis. I was preparing myself to be told that they were unable to diagnose her and it is all related back to something I did during her early childhood - yes, mumma guilt runs deep in me. I've shed a tear or two, but know that the reality of this diagnosis hasn't quite hit me yet. This is my fourth time hearing an autism diagnosis, you are never ready for it. Your reaction is different with each and every one... This one is different for me. It's rocked me in a way I didn't expect. It's hurting me deeper than I expected.

So, it's taken 4 years, but we are finally getting answers. We are getting closer and closer to working out my little girl and getting her the help she needs to lead the most positive and fulfilling life possible. They aren't answers we necessarily wanted, but since when does life ever deal us the hand that we want to see?